New uncertain member

[Lollie]

Hello, I was diagnosed with MDS two and a half years ago. No one around here has ever heard of this disease; so I would like to be in contact with others that have MDS. -- Lollie

[katherineann59]

Hi Lollie,
I was dianosed with MDS a year ago. I am new to this site though. I think you will find support, encouragement, and information that will be really helpful - I have. I hope you are doing well.
Kathy

[Zoe's Life]

Hello Lollie,

Welcome. I am glad you found us. You are so right, most folks have no clue what MDS is. For me, I think the hardest part is the medical expences right now. The fact that they will last forever for me. People kind of expect that I will get treated and move on. I don't know why that bothers me, just does. Silly, huh?

Zoe

[Ruth Cuadra]

Hi, Lollie.

Welcome to Marrowforums. I hope you'll free to post about your experiences with MDS and ask any questions you may have. I live in a Los Angeles and even in this big city, it's very rare to meet another MDS patient.

And, Zoe, I don't think it's silly to be bothered that people think you should be treated and move on. We are all taught to believe that doctors will make us better. Not so with bone marrow diseases. Often patients can live almost entirely normal lives. Other times, despite the best treatments available, these diseases take their toll. People don't know how to react to someone with a chronic disease who might be up one day and down the next. You may look well so it's easy for people to think you should feel well too. I think a lot of patients grapple with how much to explain to others about their MDS and when to just let it slide.

Regards,
Ruth

[Tom M]

Hi Lollie - Welcome aboard. I was diagnosed with MDS last year. It has been a roller coaster ride, but for now, things are going smoothly. You will meet a lot of very nice people here, and everyone is eager to help if you have questions or worries. Again, welcome.

[Maddie C]

Hi Lollie, I can relate to you and all that have replied, I was diagnosed in Jan. with raeb-1. I am rolling along but that little gray cloud overhead sometimes gets the best of me. As of yet I'm on no medication and no transfusions. BMT a possibility but no matches in my family of 4 brothers and sisters. I'm going back to Yale for a conference next week. perusing this site has helped me and I hope it helps you. I guess we all just have to hang in there. Maddie C

[kertkkey2007]

Hi Lottie, I'm sure you will like this group of people. we all seem to be on the same band wagon, and you can talk to other people who has the same problems that you do. my husband has had MDS. for 3 years now and on Dacogen, and it has really helped him. he went 4 months last time without anything. he will take his 2nd. week of 3 series of Dacogen and hoping for another 4 months + this time. Welcome again...Dot wife of Kert

[MJW]

Hi Lollie,

I have MDS - was disagnosed in 1998 with RA. My RBC blood line was the line of most concern. I was observed for many years 1998-2005, Since then, I have had transfusions (2005), Procrit with Neupogen (didn't work), Thalidomide (worked well until side effect of neuropathy made me stop). Now I am on Revlimid & Aranesp. My HgB can't seem to get to 10.

This is the place to come - I was just at the AAMDSIF Conference and met such wonderful people. This is great because we can all help each other.

[Lollie]

I want to thank you all for the information I get reading your posts.
I am wondering if any of you have trouble with a high lymphs. The last lab test I had showed a big increase. Could it be caused by Procrit? I was on Aranesp injections but my new doctor changed that to Procrit about a month ago.
Thank you all again.
Lollie